Dealing with new diagnosis

[kitsilano]

Last month I was diagnosed with primary biliary cirrhosis. Incurable, autoimmune liver disease. Symptoms (apparently) - crippling fatigue, itching so bad it can cause suicidal ideation, joint, bone and muscle pain, early osteoporosis, brain lesions which cause memory loss, confusion, inability to concentrate and eventually liver failure resulting in death (unless transplanted).

Some people go from diagnosis to death in 1 - 2 years, others remain asymptomatic for up to 15 years.

I am currently 42, with 2 young daughters, live an active life, love travelling, exercise, skiing and am really struggling to come to terms with the potential loss of my future, while knowing that I must make the most of the healthy time that I have.

I currently feel that I want to travel as much as I possible and enjoy seeing the world with my children while I am well enough. I'm planning trips that are only available if they miss a couple of days of school next term (eg Greek island where flights only leave on a Monday). Do you think this is reasonable? Part of me wants to explain the situation to school and say that I'm going to take them out as I see fit but I wonder if this may be part of losing the plot slightly.

Anyway. Thanks for listening.

I'm so sorry about your diagnosis. How awful for you and your family.

I think you should go ahead. I'm usually against taking kids out of school, but if this doesn't count as exceptional circumstances I don't know what would.

I'm so so sorry about your diagnosis. How terrible for you and your family. You sound very strong.

I'd take the kids out of school as much as you like tbh, but i think I would tell the school why.

I'm just so sorry.

Are you on (or going to be on) a transplant list?

And yes, absolutely you must make those memories. And talk to the school - if these aren't "exceptional circumstances" I don't know what is. The Greek islands - that would be wonderful. Where else do you want to see?

Thanks. To clarify, I am currently symptom-free which makes this so difficult. On the one hand - I have no symptoms so dont deserve any sympathy. On the other, there is absolutely no way of telling how long this will remain the case, so I want to share everything I have dreamed of sharing with my daughers while I am well.

No - not on a transplant list as have just been diagnosed and in very early stages of the disease. If the disease progresses, eventually I would be on a transplant list. There is a chance (though no one can tell me how big a chance) that it might progress extremely slowly and I might be symptom free for years. Most people who are diagnosed without symptoms develop them withing 5 years though as I understand.

It's hard not knowing.

It must be bloody hard. Unimaginably so.

But whatever the uncertainty - take those holidays.

I'm so sorry to hear this. What an awful thing. I have absolutely no experience but I would hope that any school would be thoughtful in your case. It doesn't sound like losing the plot - you might well want to do some stuff now while you are processing things (and the Greek islands would be perfect) and then maybe go back to a more normal routine in a few months time as you all get to grips with this as a family. Or you might not. But for now it really doesn't sound extreme. But honestly I shouldn't comment as I have no experience - I just wanted to say sorry about your awful news.

Thanks for all your kindness, it's making me teary as I am trying to be upbeat to most real-life people.

Quangle, I suspect you are right. I may be in panic mode at the moment, trying to cram things in and then if I am still ok in 6 months time I will settle into it and adjust to the new normal. But I do feel kind of justified in my panic and I need to find a way to express that to school while reassuring them that I'm not going to be completely irresponsible about my children's education.

Just found this thread by chance and didn't want to read and run. I have something similar to PBC, kitsilano. Mine is a kind of overlap of features of PBC with features of another AI liver disease. I do have symptoms now but I was symptom-free for a long time - over a decade. That seems about average really. If you have no symptoms now, then do try to harness the time you have of it being 'normal' albeit 'new normal', and do as many fo the things you want to do.

It is shit and it's very misunderstood as a condition. Not just by lay people either. Be prepared for folk to think you are a boozer!! I've had some weird (and unhelpful) convos too with med people over the years, though my current 'team' are ok.

Have you found the online support group? - it's under the PBC Foundation umbrella. You will find very many people, the majority of those diagnosed, who have come to terms with the dx and have remained symptom-free for years. Also, many/most? people with symptoms will not reach the stage of full blown hepatic failure EVER, may plod along with some problems for decades. But be reasonably okay albeit with a chronic disease. There is one woman in her 70s, I think, and she is doing ok, hasn't needed a transplant. The minority do less well with PBC, it seems.

Please feel free to PM me if you want further 'chat'.

Hi there,
I know this post is from a few years ago. How are you getting on ? Someone in my family has a positive antibody but not been given a pbc diagnosis due to lfts at a normal enough level. In hospital her lfts are higher than normal. Does it progress quickly ?